Hello, husband has been newly diagnosed as diabetic

[AmberD]

Hi, my husband was diagnosed with diabetes recently when admitted to hospital with pneumonia. We had no idea until the paramedics did a BG test and it came up very high. He was in hospital until just before Christmas and is awaiting a diagnosis on whether he is type 1 or 2. For the moment he is being treated as type 1 and is on insulin. I'm not sure what the timescale is for the diagnosis and he feels a little lost and abandoned. He was sent a link to sign up for a weekly programme for a month but has been told he can't attend until 6 months have passed as he is in the honeymoon period. We're both a bit overwhelmed, he was also diagnosed with allergic bronchopulmonary aspergillosis in November so it's been a difficult couple of months and is difficult to distinguish side effects of the different illnesses. Anyway, good to have a community to talk to and to get some knowledge and other perspectives from other group members!

 

[Cherrelle DUK]

Hi AmberD, welcome to the forum,

Glad that you've joined us as it sounds as though you and your husband have been through a lot recently and can do with some support.

There's a chance that they suspect the high levels to be due to other issues though that shouldn't stop him from getting support in the meantime. There isn't a timescale for diagnosis but sometimes you may need to be persistent so that your husband can get the right medication and support.

Given that they are other health concerns, it might be worth pushing for some kind of support. It's not easy but worth a try.

We're here to support you either way so please feel free to ask as many questions as possible and let us know if we can help in any way.

 

[Leadinglights]

The paramedics would have done a finger prick blood test which is essentially somebody's blood glucose at that moment in time but I expect the hospital would have done the HbA1C test which is the test which is used to diagnose diabetes as it is an average over the previous 3 months. It does not distinguish the Type, whether it is Type 1 or Type 2 is often from clinical presentation and hopefully if Type 1 is suspected then addition blood tests would be done.
As he has been started on insulin his blood glucose must have been quite high.
He really should be getting support from the diabetic clinic in these early days.
It would be helpful to people if you could say what insulins and doses he has been prescribe and what advise about diet.
I assume he has been given a means of testing his blood glucose either a Libre and /or finger prick testing monitor.
Infection can increase blood glucose so this could explain his high levels.
Please do ask any questions and I'm sure some of the Type 1s here will be all too willing to help.
You could also look at the Learning zone where there is information and some links which may help give you a better understanding of the condition.

 

[Inka]

Welcome @AmberD 🙂 A diabetes diagnosis is very hard initially. Being on insulin is a huge change and can be quite overwhelming to start with. Does he have a Libre? What insulins does he take? You mention a course, which I guess might be DAFNE or similar. Although he’s not being permitted to do that yet, he can still learn a little about how his insulins work. There’s an online version called BERTIE:

https://www.bertieonline.org.uk/

And also a couple of great books about Type 1 (which would still be useful even if he’s Type 2 on insulin):

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too).

 

[Spathiphyllum]

Hi, my husband was diagnosed with diabetes recently when admitted to hospital with pneumonia. We had no idea until the paramedics did a BG test and it came up very high. He was in hospital until just before Christmas and is awaiting a diagnosis on whether he is type 1 or 2. For the moment he is being treated as type 1 and is on insulin. I'm not sure what the timescale is for the diagnosis and he feels a little lost and abandoned. He was sent a link to sign up for a weekly programme for a month but has been told he can't attend until 6 months have passed as he is in the honeymoon period. We're both a bit overwhelmed, he was also diagnosed with allergic bronchopulmonary aspergillosis in November so it's been a difficult couple of months and is difficult to distinguish side effects of the different illnesses. Anyway, good to have a community to talk to and to get some knowledge and other perspectives from other group members!

Very sorry to hear about your and your husband's experience! People shouldn't be left feeling "lost and abandoned"-- even "a little".

Trying to look on the bright side: Fungal infections such as aspergillosis are much more common in people with uncontrolled diabetes; fungi love blood sugar! So you and your husband can take some comfort from that: now that he's been diagnosed as diabetic-- whether Type 1 or Type 2-- he can get his BG under control, so this kind of infection will be less likely in future.

If his doctors have decided he needs insulin and they're talking about 'the honeymoon period', this suggests they have already done a C-peptide test. This test measures how much insulin his own body is producing (if any). If his body is still producing a significant amount of insulin, but less than the normal level-- he could be a Type 1 but in 'the honeymoon period', where his immune system hasn't yet killed off most or all of his insulin-producing cells; or he could be a Type 2, but he's been Type 2 for so long before diagnosis, undetected, that his insulin-producing cells are starting to give up.

Presumably his doctors are waiting for the results of the autoantibody tests, particularly one called GAD. Autoantibody tests are practically definitive for Type 1. (Maddeningly, not quite definitive! A small percentage of Type 1s test negative for autoantibodies. But, if he tests positive, he is definitely Type 1.)

The autoantibody tests take much longer than the C-peptide test! At the best of times, the autoantibody tests can take 6 weeks. So, what with Christmas and New Year and the NHS being generally overwhelmed ... Still, if no one's given you a timescale for the diagnosis, do ask about this: whether they've done the autoantibody tests and when they think they might get the results. (And how they're going to let you know! Whether you need to ring them, or ring your GP, or is there an online system, etc.)

In practical terms, there's not much difference between being a Type 2 who needs insulin and being a Type 1-- EXCEPT that being diagnosed as Type 1 means you get more from the NHS. (This is not really fair or sensible, given that the demands of managing an insulin regime are what they are; but, currently, that's how the NICE/NHS guidelines work.)

So Inka's right-- definitely start looking at https://www.bertieonline.org.uk/ now. It will help you and your husband a lot, in understanding what you need to do.

I was started on insulin and given a diagnosis of 'probably Type 1' five months ago. The C-peptide test showed within a week that I was practically certainly Type 1 and definitely not 'honeymoon period', and Type 1 was confirmed by the GAD test six weeks later. But I still had to wait months to start the course one needs, to understand how to manage insulin. Fortunately, I found out about the BERTIE online course from this forum! Wishing you and your husband all the best.

 

[AmberD]

Good afternoon and thank you for your responses. Lots of useful information from you all, thank you. The paramedics took his blood glucose which was 35. The HbA1C in hospital was 130, the blood tests previously had shown no signs and his blood glucose was in range from his previous blood tests. He has a libre 2 and takes 22 units of lantus and 6 of novorapid. He was seen by the hospitals diabetic nurse who gave some dietary advice - basically low or no carb and has spoken to a support nurse once since. We have no idea who will notify him of which type so we do need to find this out. We will have a look at the resources recommended! Thank you.

 

[Leadinglights]

Good afternoon and thank you for your responses. Lots of useful information from you all, thank you. The paramedics took his blood glucose which was 35. The HbA1C in hospital was 130, the blood tests previously had shown no signs and his blood glucose was in range from his previous blood tests. He has a libre 2 and takes 22 units of lantus and 6 of novorapid. He was seen by the hospitals diabetic nurse who gave some dietary advice - basically low or no carb and has spoken to a support nurse once since. We have no idea who will notify him of which type so we do need to find this out. We will have a look at the resources recommended! Thank you.

Have you been given advice about treating Hypos (low blood glucose) as if he is taking insulin but having no carbs that is a possibility. So keep an eye on that as the insulin dose will assume a certain amount of carbs are being eaten, did they mention how much he should have at each meal.
@Inka or @rebrascora may be able to reassure you about that.

 

[AmberD]

They said that if he wasn’t having any carbs to not use the novorapid but that was about it as far as I know.

 

[AmberD]

He was told to eat 5 jelly babies if he went lower than 4

 

[rebrascora]

Hi and welcome from me too.

It seems very odd to me that they have told him to eat no or low carb but then told him to take 6 units of NovoRapid.... I am relieved that they said, if he eats low carb, not to take the NR but there is a big difference between 0 and 6 units and if he only had a small amount of carbs and took 6 units then he could easily hypo. Have you used the NovoRapid at all yet and if so, what was the meal he ate and how did his levels behave afterwards?
Great to hear that you have Libre as that will help to keep him safe but the advice you have been given seems a bit contradictory.
The general advice for hypo treatment is 15g carbs which is about 3 jelly babies or 4-5Lift tablets (glucose tablets) He should do a finger prick test (not Libre scan) after 15 mins to ensure that his levels have come back up above 4 and if they haven't, then he would need to take a second hypo treatment of another 15g carbs and test again in 15 more minutes again with a finger prick. Once his levels are above 4 then a small slower carb food like a half a slice of toast with peanut butter or a digestive biscuit or a couple of oatcakes with cheese can help to stabilize levels. Personally 2 JBs is usually enough to treat the majority of my hypos and no slower release carbs afterwards but it is better to play it safe initially and use the full 15g carbs. When you have a hypo sometimes you get ravenously hungry and just want to eat the whole packet so it can be helpful to portion them up into 3 JB pouches, so that you aren't tempted to over treat.

 

[Spathiphyllum]

It seems very odd to me that they have told him to eat no or low carb but then told him to take 6 units of NovoRapid.... I am relieved that they said, if he eats low carb, not to take the NR but there is a big difference between 0 and 6 units and if he only had a small amount of carbs and took 6 units then he could easily hypo. ... Great to hear that you have Libre as that will help to keep him safe but the advice you have been given seems a bit contradictory.

Yes indeed; if AmberD hadn't said her husband had already been given a Libre 2, I would have been extremely worried!

AmberD: I am assuming you have the Libre 2's low-glucose alarm turned on?

And even so-- ok, the low-glucose alarm should prevent your poor husband from going into a hypoglycaemic coma! But it still seems bizarre that they didn't advise you on roughly the amount of carbs per meal that was likely to be ok for the amount of NovoRapid per meal they have suggested.

Also, if he was diagnosed before Christmas, seems appalling that he has only "spoken to a support nurse once since". For the first ten days after I was diagnosed, one of the DSNs (diabetes specialist nurses) rang me *every weekday* to check my BG readings and discuss/support, as well as giving me a number to ring them if I had any concerns or questions. Everyone should get that. Just giving someone a brief overview and then off they go ... That's like giving someone a brief overview of driving, then handing them keys and a car and telling them 'Off you go; you now have to drive 4 times a day, we'll check in on you in a few weeks.'

AmberD, I hope you've been given a contact number for the diabetes team, and do feel free to use it!

 

[AmberD]

Good morning, he was only told that if he had a chicken salad or such like he shouldn’t jab, but nothing at all about carbs. The lantus was lowered to 22 from 24 by the DSN last week which brought his overnight baseline up to 6ish, but it is now back to around 4-5 which is causing problems as he cannot drive then. It is 3 weeks until the next DSN appointment so it is interesting that spathiphyllum was contacted daily. That would be far more reassuring! I like the analogy to the car driving! You’re right! He has had Wholegrain toast for breakfast this week but has had 3 different responses to it - over, under and just right.

He was also wondering who would tell him what type of diabetes he has. He was diagnosed in hospital so back to the team there?

Thank you for all your help so far, it is much appreciated.

 

[Inka]

Although the consultant might be waiting for test results to help determine his type, they can often make a educated guess, eg based on your husband’s weight, family history, presentation at diagnosis, etc, etc.

I too find the low/no carbs advice strange and potentially risky. If he is Type 1, then a normal diet is what’s recommended along with appropriate amounts of insulin.

If he’s going too low overnight, then he needs less Lantus. It’s far better to be slightly high than risk going low, especially early in diagnosis. If he’s not confident in adjusting his own dose then could he phone his hospital team?

As he’s on fixed doses of mealtime insulin, it’s best if he sticks to a similar amount of carbs for each meal (to be clear, I mean x amount at breakfast, y amount for lunch, etc). He can find the right amount by counting the carbs and seeing what amount works best for his blood sugar. ‘Best’ doesn’t mean as low as possible, it means a safer mid-range.

A note about the Libre - although it can alert to low and dropping levels, in worst case scenarios (fast dropping, not enough carbs, etc) it’s still possible to have a severe hypo, so it’s far, far better to aim for slightly higher numbers, than walk a tightrope and risk a massive hypo.

 

[Lucyr]

Good morning, he was only told that if he had a chicken salad or such like he shouldn’t jab, but nothing at all about carbs. The lantus was lowered to 22 from 24 by the DSN last week which brought his overnight baseline up to 6ish, but it is now back to around 4-5 which is causing problems as he cannot drive then. It is 3 weeks until the next DSN appointment so it is interesting that spathiphyllum was contacted daily. That would be far more reassuring! I like the analogy to the car driving! You’re right! He has had Wholegrain toast for breakfast this week but has had 3 different responses to it - over, under and just right.

He was also wondering who would tell him what type of diabetes he has. He was diagnosed in hospital so back to the team there?

Thank you for all your help so far, it is much appreciated.

He can drive a car if he wakes up at 4-5 so long as he eats something first. You said he eats toast for breakfast so that would be fine. It’s only if he goes under 4 and it’s confirmed on a finger prick that he needs to wait before driving

 

[Spathiphyllum]

It is 3 weeks until the next DSN appointment ... He was also wondering who would tell him what type of diabetes he has. He was diagnosed in hospital so back to the team there?

If he was diagnosed when he was in hospital with pneumonia: the hospital consultant will have written to your GP, telling your GP what the preliminary diagnosis was, and also probably saying what tests they had done. Ask your GP to send you a copy of the letter. (It's not at all uncommon for patients to ask for copies of such letters; in fact, in my area, electronic copies are put on a secure online system so you, the patient, can log in and see.)

You haven't said whether his DSN is part of his GP's practice team or part of a hospital-based team? If the latter, the hospital consultant will probably also have written to them. So you could contact them and ask for a copy of the letter, or for them to tell you what it says: whether it says something like 'probable Type 1', what tests it says he has already had and what the results were, what tests they're waiting for results on. You may well want to contact them anyway, to ask various questions!

It does sound like they think he's Type 1, though. Amongst other things: Type 2s rarely get Libres on the NHS.

I suspect their reason for having the next DSN appointment in 3 weeks is that that's when they expect autoantibody test results to come back. Normally, one of the simplest ways to tell the difference between T1 and T2 is that T1s often lose a lot of weight, unintentionally, in the weeks or months before we come to the medics' attention. But, if your husband ended up in hospital with pneumonia, the pneumonia itself might well have caused him to lose a lot of weight unintentionally. So they will want the autoantibody tests to make sure. (Not actually a good reason to make you wait 3 weeks to speak to the DSN again, though!)

Anyway-- do contact either your GP or your hospital-based diabetes service, so you can get some answers and some support and reassurance.

 

[AmberD]

So, after much phoning around, the autoantibody tests came back negative and he was told by the admin of the hospital diabetes group that he does not need insulin but couldn’t say what he should do about the insulin he is currently taking. Don’t know if he is type 2 or something else, but diabetic specialist nurse was unavailable to advise on what he should do about insulin he is now not supposed to be taking and is causing low blood sugar. She is phoning on Tuesday. In the meantime, not quite sure what to do next or what this means. A phone call to the GP led
Nowhere as the GP needs to speak to him which will also happen Tuesday; although if he hadn’t rung them, not sure when they would have contacted him! All very stressful and confusing!

 

[Leadinglights]

So, after much phoning around, the autoantibody tests came back negative and he was told by the admin of the hospital diabetes group that he does not need insulin but couldn’t say what he should do about the insulin he is currently taking. Don’t know if he is type 2 or something else, but diabetic specialist nurse was unavailable to advise on what he should do about insulin he is now not supposed to be taking and is causing low blood sugar. She is phoning on Tuesday. In the meantime, not quite sure what to do next or what this means. A phone call to the GP led
Nowhere as the GP needs to speak to him which will also happen Tuesday; although if he hadn’t rung them, not sure when they would have contacted him! All very stressful and confusing!

You could try ringing 111 for advice explain the situation and the uncertainty you have been left it as it is quite a few days until Tuesday.

 

[AmberD]

So an update - my husband was told to
Stop taking novorapid and to reduce lantus to 20. He has just spoken the diabetes team and they say there is a 30 week wait for a consultant but they have spoken to one in passing who has said he should be treated as type 2. He has not had a c-peptide test or a pancreas scan as the nurse in the hospital said he needed. So
He needs to reduce lantus by 5 units and take 1 metformin a day for one week and then increase by one tablet and reduce lantus by 5 units. He weighs 80 kilos and is 5’9” so needs to lose a bit of weight according to the BMI index. He is eating a low carb diet, is there any other advice on whether he could achieve remission?

 

[everydayupsanddowns]

So an update - my husband was told to
Stop taking novorapid and to reduce lantus to 20. He has just spoken the diabetes team and they say there is a 30 week wait for a consultant but they have spoken to one in passing who has said he should be treated as type 2. He has not had a c-peptide test or a pancreas scan as the nurse in the hospital said he needed. So
He needs to reduce lantus by 5 units and take 1 metformin a day for one week and then increase by one tablet and reduce lantus by 5 units. He weighs 80 kilos and is 5’9” so needs to lose a bit of weight according to the BMI index. He is eating a low carb diet, is there any other advice on whether he could achieve remission?

Thanks for the update @AmberD

Sorry there’s such a huge wait to see the consultant, and that some of the checks haven’t yet happened

Hopefully all the results will be in by the time he gets to see the consultant?

Remission isn’t possible for everyone, but aiming for significant weight loss (10kg in the research trial) especially weight around the middle / abdomen seems the best strategy to kick-start the pancreas and repair beta cell dysfunction.

Alternatively, many here successfully manage their BG levels long-term with a low or moderate carb diet and without meds, which can be considered remission of a different type.

Hope he gets on well with the switch away from insulin.